Fibromyalgia ME and DLA

shabbyrose

hi all I am new to the forum. My hubby has been a member for several years now. I am having a rather uncomfortable experience with the decision makers over at the DLA. I have been getting DLA for 3 years due to Bi polar and Anxiety. I get middle rate care and low rate mobility. In the past 3 years I have also been diagnosed with fibromyalgia and Chronic Fatigue which effects my mobility and care needs greatly. When it was time for my renewal (due in FEB) I painstakingly detailed every aspect of my daily life living with these conditions. I got my award in on the 23 and they are still giving me middle rate care and low rate mobility:mad:. My doctor had not even been called to verify that I even had the conditions let alone how it effects my care needs and mobility. In my opinion and from what I have read I clearly qualify for high rate mobility. I walk with a stick and I go to condition management which deal with pacing issues, CBH and pain management. I am in pain before I even take a step. Why have they not even acknowledged this? I am asking for a reconsideration, but I honestly don't know what I could have done differently. I am writing a letter to the new decision make as to why I would like my claim looked at again.

When I first applied for DLA 3 years ago I got denied and then got middle rate care and low rate mobility on the reconsideration, so I am really hoping this will be the case with my new claim. Anyone have any similar experiences? Or any fibros ME people out there on higher rate mobility..

Thanks...

zzzLazyDaisy

Sorry to hear about this - what you could have done differently (and should do now) is to get letters from your GP, pain managment clinic, consultant and any other professional involved in your care, to support what you are saying about the pain and its effect on your ability to walk, and send them to DLA.

It is always a mistake, in my view, to depend on DLA contacting your doctor, as they often don't.

shabbyrose

zzzLazyDaisy wrote: »

Sorry to hear about this - what you could have done differently (and should do now) is to get letters from your GP, pain managment clinic, consultant and any other professional involved in your care, to support what you are saying about the pain and its effect on your ability to walk, and send them to DLA.

It is always a mistake, in my view, to depend on DLA contacting your doctor, as they often don't.

I thought they would have at least sent out a doctor to have a look at me, but they didn't do that either. It's so stressful.

Paparika

you need to get help with the forms/appeal.

i'm also a fibro sufferer (have spent the last 2 days mostly sleeping.. awake at 10 this morning, half hour later i was ready to go back to bed just exhausted)

I'm high mobility and middle care, wasn't a problem for me, first time applied, but these forms can be hard,

shabbyrose

Paparika wrote: »

you need to get help with the forms/appeal.

i'm also a fibro sufferer (have spent the last 2 days mostly sleeping.. awake at 10 this morning, half hour later i was ready to go back to bed just exhausted)

I'm high mobility and middle care, wasn't a problem for me, first time applied, but these forms can be hard,

I was quite thorough and was confident when I sent out the forms, it just seems they couldn't be bothered to check the information on it. I think it is maybe I sent in a care plan done by the CPN for the Bi polar and no evidence to support the fibro ME. I feel like some kind of beggar going and asking eveyone to write a letter for me. And going for appointment can be like torture. Tired even thinking about it.

YorkiePud_3

I have fibromyalgia too and get low rate care but high rate mobility.

Something that I was advised to do ... when it asks you how far you can walk without being in pain, well, of course we know we push ourselves to do what we need to do before we get to the point of collapse, BUT we are in pain ALL the time .. so don't put x amount of yards ... you need to put a zero.

You need to explain that you are in severe pain ALL the time and that any activity or movement makes it even worse. People just don't understand that we can be in such terrific pain without having done anything ... so as I say, in the box where it asks you how far you can go without pain, put 0 yards ... it isn't making fibs up, it is telling the truth.

My doctor wasn't contacted either but someone did come out to see me. She wasn't here for more than ten minutes if that and said everything was fine with my application form, so being advised to put that may have really helped them understand that with fms, you don't have to go mad and be active to be in blooming agony!!!!

Thinking about it though, I doubt asking my doctor would have helped .. I mean yes, he is happy to sign the prescriptions for my 28 tablets a day pain maintenance, but will then tell me in no uncertain terms he is unsure about fibromyalgia (I was diagnosed by a rheumatologist who said fms has been known about for the past 30 yrs in USA) ... yet a lot of docs here just won't put their name to the diagnosis. Very sad .. they could really help a lot of people ...

Anyway, just thought I would mention it ... I hope things work out for you ... *S*

shabbyrose

thanks all for your help guys. I did a bit of research and wrote this letter. Do I sound to arrogant? I can't remember what I actually put on my claim form, but I was clear that I was in pain all the time. Here is the letter I am going to send to the new decision maker.

Dear Decision Maker,

Firstly I would like to thank you for looking at my claim again. In this letter I will detail my reasons for requesting a reconsideration of my current award. I feel the original decision maker did not take in to account my ongoing mobility problems or my physical condition as a whole when making the decision to award me with lower rate component of my DLA, and no investigating was done to confirm my claims on my form. I was upset to learn that my GP, CPN or advisor with the Condition Management Program was not contacted to support my claim. I was not aware that it was my responsibility to approach the relevant parties for their report on my condition to provide to support my claim. I will now approach them and send in their letters with this one.

During the last 3 years I have been getting DLA, I have been diagnosed with the debilitating conditions Fibromyalgia and Myalgic Encephalomyelitis (ME). I clearly detailed in my claim form how these conditions effect my daily life, and I truly believe I am eligible for the higher rate mobility. I understand to qualify for HRM I have to be classified as virtually unable to walk. The reasons I consider myself to be virtually unable to walk is as follows.

Firstly, my Fibromyalgia causes me severe pain on a daily basis and I am in pain before I even take a step. According to my understanding any distance that I walk despite being in pain must be discounted as I am already in severe discomfort before I even walk. Therefore, I am virtually unable to walk.

Secondly, my ME causes limitations on any physical activity that I do. I need to be aware of how much energy I am using as I only have a limited amount of energy and I have to use my energy wisely. For things such as eating and dressing myself. My ME effects my recovery time after doing any physical activity and must be careful to pace myself. Something as simple as going to a medical appointment can take all day for me to recover from, and may also cause me additional pain. The amount of time it takes me to recover should also be taken into account and also meets the definition of being virtually unable to walk.

Lastly, it is also my understanding the regulation dealing with the higher rate mobility component of DLA, must assess my physical condition as a whole. Not only the distance I can walk needs to be taken into account, but also the times when my ME causes such fatigue that I am too tired to walk and really shouldn’t because it may cause me additional pain and discomfort.

These conditions I have been told are permanent, and although I am receiving treatment to help me cope with them such as: Pacing techniques. Cognitive Behavior Therapy and Pain Management I am not likely to recover from them.

Being in such pain every day also exacerbates my depression and anxiety already there due to my Bi-polar type 2.

sunnyone

shabbyrose wrote: »

thanks all for your help guys. I did a bit of research and wrote this letter. Do I sound to arrogant? I can't remember what I actually put on my claim form, but I was clear that I was in pain all the time. Here is the letter I am going to send to the new decision maker.

Dear Decision Maker,

Firstly I would like to thank you for looking at my claim again. In this letter I will detail my reasons for requesting a reconsideration of my current award. I feel the original decision maker did not take in to account my ongoing mobility problems or my physical condition as a whole when making the decision to award me with lower rate component of my DLA, and no investigating was done to confirm my claims on my form. I was upset to learn that my GP, CPN or advisor with the Condition Management Program was not contacted to support my claim. I was not aware that it was my responsibility to approach the relevant parties for their report on my condition to provide to support my claim. I will now approach them and send in their letters with this one.

During the last 3 years I have been getting DLA, I have been diagnosed with the debilitating conditions Fibromyalgia and Myalgic Encephalomyelitis (ME). I clearly detailed in my claim form how these conditions effect my daily life, and I truly believe I am eligible for the higher rate mobility. I understand to qualify for HRM I have to be classified as virtually unable to walk. The reasons I consider myself to be virtually unable to walk is as follows.

Firstly, my Fibromyalgia causes me severe pain on a daily basis and I am in pain before I even take a step. According to my understanding any distance that I walk despite being in pain must be discounted as I am already in severe discomfort before I even walk. Therefore, I am virtually unable to walk.

Secondly, my ME causes limitations on any physical activity that I do. I need to be aware of how much energy I am using as I only have a limited amount of energy and I have to use my energy wisely. For things such as eating and dressing myself. My ME effects my recovery time after doing any physical activity and must be careful to pace myself. Something as simple as going to a medical appointment can take all day for me to recover from, and may also cause me additional pain. The amount of time it takes me to recover should also be taken into account and also meets the definition of being virtually unable to walk.

Lastly, it is also my understanding the regulation dealing with the higher rate mobility component of DLA, must assess my physical condition as a whole. Not only the distance I can walk needs to be taken into account, but also the times when my ME causes such fatigue that I am too tired to walk and really shouldn’t because it may cause me additional pain and discomfort.

These conditions I have been told are permanent, and although I am receiving treatment to help me cope with them such as: Pacing techniques. Cognitive Behavior Therapy and Pain Management I am not likely to recover from them.

Being in such pain every day also exacerbates my depression and anxiety already there due to my Bi-polar type 2.

What is the point of this letter?

You need to appeal within a month of the award that you are disputing and you dont need to elaborate on why you are appealing, just that you are.

You then need to collect evidence to back up your claim, nothing to do with diagnosis but what the conditions do, as in your care and mobility needs now.

You have to provide the evidence/basis for your claim and thats where you have gone wrong, dont assume that the DWP will contact your doctors or that they even consider what copeing stratergies that you are learning unless its to remove/lower your award.

Things have changed for DLA applications/awards and against the "customer".

shabbyrose

sunnyone wrote: »

What is the point of this letter?

You need to appeal within a month of the award that you are disputing and you dont need to elaborate on why you are appealing, just that you are.

You then need to collect evidence to back up your claim, nothing to do with diagnosis but what the conditions do, as in your care and mobility needs now.

You have to provide the evidence/basis for your claim and thats where you have gone wrong, dont assume that the DWP will contact your doctors or that they even consider what copeing stratergies that you are learning unless its to remove/lower your award.

Things have changed for DLA applications/awards and against the "customer".

I am not yet appealing I am just asking for a reconsideration. Was just told to write to the new decision maker why I wanted my claim looked at again.

Don't know how much evidence to provide them with, only new thing I can offer is a letter from my doctor and CMP adviser. I don't know how much evidence these people need.

sunnyone

shabbyrose wrote: »

I am not yet appealing I am just asking for a reconsideration. Was just told to write to the new decision maker why I wanted my claim looked at again.

Don't know how much evidence to provide them with, only new thing I can offer is a letter from my doctor and CMP adviser. I don't know how much evidence these people need.

A reconsideration is done immediately on appeal and most agencies recomend going straight to appeal.

You need as much evidence as you can get from everyone involved in your care to appeal this and by everyone, I mean everyone including OTs, nurses, doctors, SWs etc but you have time to collect this after you have sent a GL24 (I think thats the one but a letter saying you are appealing will do)

zzzLazyDaisy

The best advice is to appeal. In the appeal ask that the decision be reconsidered, but if the decision stands then you wish to proceed immediately to an Appeal. This ensures that you don't miss the time limit.

But yes, you do need to get the evidence from your GP and any other professional involved in your care who is willing to confirm that you are unable to walk without being in severe discomfort/pain.

My son's award was revoked completely on his last renewal, after being on HRM/MRC for the past 10 years. His condition had deteriorated significantly since the last award, and the EMP who examined him confirmed that his condition is unlikely to change, apart from a significant risk of deterioration in the future.

We put in an appeal, backed up by a robust letter from his GP who had been visiting him at home for the past month.

Although we had appealed, the papers were passed to a manager to be reconsidered and the award was reinstated straight away.

A good supportive letter from a professional can work wonders.